Hello, I was just formally diagnosed with PKD today. However, last week after my U/S I was given a login to the American Radiology patient portal that would allow me to access all of my previous images along with the new ones once they were reviewed by my Dr. While browsing through my file, I came across a report for a MRI 2 years ago suggesting PKD as there were numerous cysts found in both kidneys of multiple sizes. This particular scan was to rule out MS at the time. This went overlooked until recently when I found that my dad (66 years old) was just recently diagnosed with stage 5. I immediately reached out to my Doctor to get checked as all of the signs from back then and now all point to this; mainly the sudden onset of high blood pressure back then. Looking back on a blood test that I had back in Sept 2016- my Serum Creatinine levels were at .73. Back in June 2015 it was .84. After giving me the news today, she didn’t seem too concerned and told me to come back for a blood test in 2 months and she switched me to Lisinopril 20mg. I want to be sure that this doesn’t get brushed under the rug any more than what it has. I have a lot of cysts in each kidney measuring more than 3cm in size. Both kidneys are enlarged, however, my left kidney is outside the normal adult size range. Seeing all of this information not to mention it being in my file for 2 years without coming to light; really worries me that I received a lack of knowledge of what I should do as far as dieting, pain killers, etc. (things that I’ve found on the web) going forward. Am I over reacting? Will a kidney specialist not schedule to see me since I am not at a late stage?

Polycystic kidney disease (PCKD) is often a silent disease that may not be detected until you have a scan for other reasons.  You should have annual testing for blood and urine to measure your kidney function and your blood pressure should be controlled to less than 130/80.  If you are otherwise leading a healthy lifestyle and maintaining a healthy weight, there may not be much else you can do. You should not smoke and you should continue to exercise on a regular basis. There is no other treatment necessary for early stage PCKD.

You can review PCKD on our web site at:  https://www.kidney.org/atoz/content/polycystic

 

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